On raising a son on the autism spectrum, progressive politics, pop culture, and coffee addiction.

Tuesday, January 23, 2007

Help us, oh wise ones

This afternoon I got an "SOS" e-mail from a reader named Lisa, whose son Jared has autism. She was looking for advice about dealing with challenging issues involving aggressive responses from Jared when things are not going the way he wants them to go. My family has not experienced those particular issues, so I had two pieces of advice for her:

Lisa jumped at both ideas, so I'm posting her e-mail here and imploring you to post your best ideas, suggestions, and words of advice in the comments section. Lisa writes:

My family is challenged by Jared's aggression problems. Over the slightest correction or frustration, Jared melts down, then lashes out. He consistently lashes out at me, his younger brother and our dog, and this has me very concerned. I am the parent that works full time, so my husband is the at-home parent. My husband is much more successful with Jared than I, or his female teachers, but Jared will hit him too. These meltdowns leave pretty much everyone a mess, except for Jared.I've printed up tons of info on behavior modification techniques, but I'd be a fool if I didn't ask those in the trenches (some crap filled, some not). Do you know of any resources that could help?Okay, wise blogosphere friends, you are the best resources I know.

19 comments:

I don't know a thing about him, but I do remember doing things like that. In my case, I was often super-defensive because of already bullying at school and such, I was just in what a friend calls battle-mode, all the time. I don't know what would have pulled me out of it, except time.

Henry was quite aggressive around age 5. At that time he was enrolled fulltime in a preschool where he was receiving itinerant (i.e. brief and sporadic) special services, but he did not yet have a diagnosis. I think he, too, was in "battle mode".

Henry pinched the psychiatrist's face so much during our evaluation that the doctor was bleeding by the end!

We got our diagnosis at 5 1/2, and Henry started attending a very small, VERY structured school program at age 6. Those folks quickly got a handle on the aggression.

I cannot be sure if things changed because of the program he was in, just growing older, gaining more language, or a little of each.

I don't know that I'm offering much besides telling my story... I just know that my son responds to calm voices, few words, deep pressure hugs, and letting him know that we understand his frustration, but that it's still not ok to hurt anyone.

Ballastexistenz and Gretchen, it's interesting to me that you both mention that there were (probably) external conditions that triggered the aggression in your experience. In my e-mail to Lisa, I also said that when we have seen "aggressive" behavior from Bud it's always been the result of him being unable to deal with external conditions - too unpredictable/unstructured, or too fast paced, or too loud, or too many people, etc.

Honestly, it sounds to me like Jared is already feeling anxious, and then things happen that send him "over the edge". Then he erupts, and he lashes out because that's all he's able to do to express his frustration.

There is a great program out there that looks at monitoring one's own internal emotional state. It's called The Alert Program, and it can be used across the spectrum and across the lifespan.

We went through a phase like that with my son where he would tear my house apart, bite my husband and kick the cat. He is usually such a sweet child, but when he's really disregulated he can get aggressive too. We just had to make some modifications to our lives to help regulate him. We stopped going out as much, we started talking softer and using fewer words with him and we let him know that we're trying to understand how he feels and we want to help him feel better. Now, whenever I see him start to get disregulated I get him into an activity that will help regulate him. Jumping, crashing, wrapping him in a blanket, letting him play with water or hugging him has helped.

I have two veins of thought. I am going to play the advocate and I am going to play the "teacher/administration". Sadly, these often vary in approach and opinion. I will offer my thoughts as both and hope something is of use.

Obviously the first plan of action is proactive behaviour on the part of the teacher/parent/care-giver. Reinforcing the positive behaviour is tanamount. Offering "time away'- different from time out as the child is taught when they feel the need to seek refuge from noise, etc. This requires lots of social stories to begin the dialogue on feelings. Making scrapbook pages of happy photos or clippings, sad, scared, mad and most importantly "shaky". That was the term we used to describe the feeling of anxiety with one of my latest students. During a 1:1 teaching situation, we role played lots of feelings and when I fidgeted, pretended to cry and kicked the desk, his word for what he'd seen was 'shaky'. Daily reference to these pages and of course access to them allows for a child to express with pictures what they may not be able to do with words. Realistically, there are going to be times when because of situation, illness, colour of the sky- who knows, that using the book is simply not feasible or safe. As a parent, you need to decide what steps you are willing to follow through on. It is more than heart-breaking to see a child in that kind of distress. BUT, an even keel (if only appearingly) allows the child to feel safe, comforted, and accepted. If you choose to use physical means to provide safety for your child, I would suggest looking into Non-Violent Physical Crisis Intervention. These courses are mandatory in our school district for all staff working with students who require behavioural support. The course teaches the crisis team to ensure the dignity and respect of the 'child/teen/adult involved. They also teach positive proactive interventions to try long before physcial intervention may be required. I think it is important to remember that you love your child beyond anything anyone else can understand, and keeping your child safe is the most important thing. If you need to seek support in order to facilitate that, then do, it shows tremndous courage.

Okay now the Teaching/Administration side of things. It is the job of the teacher under the supervision of the principal to ensure the safety of all the students in their class. As such, policy mandates that if the safety of the child and/or others is at risk, the teacher, upon approval from the principal make the best decisions they can at the time using due diligence and due care. They may use strategies such as time out in a segregated room, physical restraint or other measure approved by the school and it's Board.

As an educator, I always appreciated having a face to face conference with all involved staff and the parents or care-givers in attendance, at the very first opportunity. Discussion of the pro-active measures and reinforcement protocols happens first. Then, together, a crisis protocol is written to ensure the safety and dignity of all involved, but most importantly the child/teen/adult. Consistency and unity are the biggest factors for encouraging success in my eyes. Make it a team effort.

I hope even the hope that there is help out here encourages you. Keep searching and keep working with your partners in education etc.

We are having similar issues with Brendan becoming upset and/or lashing out when things don't go his way. He's 10, going on 11, & we've been told by his teachers that this is normal, preadolescent boy stuff, with the added excitement of autism. So far he manifests his distress as meltdowns (rocking onthe floor, moaning, screaming, crying) or by lashing out verbally, so he hasn't destroyed anything (yet). This meltdown behaviour began to occur just before his 8th birthday & was an early manifestation of his developing serious OCD & Tourettes. He was definitely self-injurious back then, & we have used everything from cognitive/behavioural therapy, to medicines (SSRIs, seroquel, klonapin), to increasing our awareness of the things that trigger his meltdowns & doing our best to modify his environment to help him cope, over these past few years. We have noticed that he's much more likely to have behavioural difficulties at home, which tells us that, not only is he able to take some control of it (a good thing), but that he can & does choose to "let it all hang out" in a safe place (which is, basically, a good thing too- although rough on family members). I would definitely look into what's going on at school & see if the stress there can be reduced, because it may make things at home less difficult. We are fortunate to have a really great child psychologist who helps us figure out what's going on with Brendan & also guides us through the rough patches, as well as providing Brendan with the cognitive/behavioural therapy. This kind of help is a treasure... Best wishes!!

This is such good stuff! I knew I was coming to the right place. Janna, the OT who worked with Bud's preschool talked about The Alert Program. It sounded great.

Jessica, your comment reminded me of a post I wrote during a particularly dysregulated time.

In fact, Lisa, now that I'm thinking about it, you might want to look into the SCERTS model. One of the key pieces of it is "Emotional Regulation," which is all about providing the right supports and environment for a child to be able to "regulate" to an "optimal" emotional state, in which they are "available for learning and engaging." I went to a two day workshop with its founder Barry Prizant, and it really help me reframe the way I was thinking about a lot of things.

4 - We also used social stories with Bud in Kindergarten when he went through a (thankfully brief) hitting phase. We also gave him a script to use instead of hitting: 1) Say "I am angry"; 2) clap hands hard (or stomp feet hard; 3) deep breath in; deep breath out. It seemed to work.

Something about being 7----I just posted on Charlie's having hard times starting at 7, esp. an increase in aggressive behavior. Time, among other things, helped, but coping strategies are good to teach and learn----Charlie grew up a lot in the years from 7 to now, I have been thinking, and the aggression was (I suspect) one way in which Charlie's greater alertness about the world manifested itself.

My son is very aggessive as well and has been since he was about 5 (he is 9 now). He is just starting to come out of it. I found anxiety and frustration brought it out the worst. He went through his days ready for a battle because it was the only way he could protect himself. He has hit me and his dad, his sister, his teachers and even the (male) principal got it between the legs once. We are coming out of it now after making a huge number of changes. We started reducing the stress in his life. Make sure he knows exactly what is coming up and when and exactly what is expected of him in certain situations. Give him the opportunity to ask questions if he can - give him time - don't put words in this mouth -- the same goes for answering questions. Don't overstimulate him. Don't force him to go out with you if his comfort zone is in the house - especially not on days that he has been at school. Make sure he has routines. Try to give him quality time on his own - just the two of you doing something other than homework or 'things that need to get done'. After a hard day at work you probably want time to yourself but make sure you set aside time for him with no dad or brother. I am home all day and get household stuff done then so that my evenings are free to be with Dan. His dad works full time and is away a lot but they have a bedtime routine that they do together when ever they can. The old 'repeat his feelings and frustrations to him' that you need to do to kids going through the terrible twos still works for us. Tell him you understand the feelings that he has (even if sometimes you don't). Make sure his teachers treat him with RESPECT. Just like everyone else we give respect to those that give us respect. Don't force him to do something he doesn't want to do - he is not just being disagreeable - he mental, pysically, emotionally can't do it. Obvious to everyone (except to my son's teacher) don't use force. It is human nature (as well as the nature of every other animal on the planet) to defend ourselves and protect ourselves with force. We can think things through and stop ourselves from giving a well deserved punch to the person that cuts in front of us at the store. Animals don't do that - you get in their way and they let you know! I an not comparing autism kids to animals but trying to say that it is an impulse control problem - not always mean spirited. We have an anxiety and anger 5 point scale that is visible when Dan does his work at school. He lets people know where he is on the scale and then they decide if a break is needed before the meltdown has a chance to get started.This is too long of course but these (and probably more that I have forgotten) are things that have worked for us and we are in the process of trying to educate Dan's teacher on the same things. Not going well because she knows everything and storms out of the room more than he does now!

BLECH!! i just posted the looooongest comment in the world but it disappeared! ahhhhh! okay, i shall try again...

i have many questions: how old is jared? is this something that just started or has it gone on for a while? do you notice it happens more at certain times? at the end of the day? is it in response to things being too much, bright, loud, confusion, dark, soft, confusing, frustrating? do you think he is overwhelmed at school? many kids seem to hang on and keep it together during the school day but then fall apart at home from the stress.

have you changed anything in his diet? supplements? especially vitamins? could it be in response to certain foods?

could is be sensory related? the more i read about judith bluestone's HANDLE approach the more it makes sense to me for fluffy and his sometimes aggressive responses as due to sensory processing disorders. could other sensory things be going on with jared? woudl it help to do certain things throughout the day to help expell and direct his energies? the old, push, pull, lift, carry?

i found The Explosive Child to be VERY helpful. fluffy doens't fit the description exactly but lots of the suggestions helped us frame the situation differently. i would say, don't listen to anyone else tell you what you ought to do or what your child ought to be able to do, say, etc. just concentrate on what works for your own child. they talk about how typically one uses time outs and consequences at the BACK end of the difficulty and how that doesn't work for many of our kids. instead, they focus on the FRONT end, on looking at what may be triggering the difficulty and making decisions about what to pursue and what to let go of.

i'm not sure if jared is verbal? can he understand the 'rule's or express later what might be troubling him? we created a "Mad Place' for fluffy to go to in his room, a safe place for him to work out some of his energy., a place to scribble widly with crayons, squeeze squishy OT balls, throw a bean bag around, hit and roll around in pillows, tear paper, stretch stretchy bands, etc. etc.

it doesn't work for us to use time outs and traditional consquences. fluffy needs TIME INS and ways to channel his energies. he certainly CAN NOT be expected to hear a lot or much of anything when he's upset. he is in a whirlwind, the last thing he's able to do is collect his cognitive processes and 'mind' space or even his body space and simply, snap out of it. any new approaches or teachings or understandings must be presented SIMPLY and much later, when he is feeling good, calm, happy.

it helps for fluffy to have a place to wind down at the end of the day. a big long warm bath of epson salts + baking soda works wonders.

we also looked at places and times when he's feeling badly about what he's having trouble doing. often, the anger or upset is about not feeling good about himself, feelings of incompetency, even feeling bad about something he did or a way he acted that he didn't like or that he knew others didn't like. he's what they call a 'thin-skinned' child, an ultra sensitive child that feels things VERY deeply, inside and from around him. at the same time, his self control is delayed. he doesn't know how to postpone gratiifcation, to wait, to ask before he grabs. and so he does that and others get bothered and then he reacts A LOT to their upset. if a child hits or bumps into him by accident, his is TERRIBLY upset by it,feels wounded, hurt, and then infuriated by it and can respond wildly. although, underneath, he wants to be friends, wants to feel liked.

he also needs to be in on the 'working things out', feel considered and included when we are problem solving as a family. he feels the injustice or the powerlessness very deeply when or if a descision is made in a unilateral way. it's tricky to parent since one has to make some rules and follow through and we ARE the parents after all, but i've found that it simply works better when we find a way to include him, to try to 'work things out' so we are all 'happy with the result' as much and as often as possible. it takes time and creativity!

you are welcome to email me privately if you want! i hope something i've said is helpful! good luck! it will get better!

Holy floodgates, Batman! Keep it coming, I am so appreciative that you all have responded, it really means a lot.

Jared is 7, verbal, and smart. He was a master of manipulation at the age of two, and you can't manipulate if you're a knucklehead.

Some background: our family of four evacuated our New Orleans residence due to Hurricane Katrina. We spent four months in MA, (ironically not far from Susan Senator) because schools were closed in New Orleans. Jared and his younger brother Thomas enjoyed living at their Mimis' house, but were totally pumped to return to their home in New Orleans. Jared changed schools, but (cha-ching!)had his same teacher from the previous school year. For the first 30 days Jared was happy and cooperative, but it was still a challenge to get him to do work. As much as we love this teacher, it seemed like Jared had learned how to push her buttons to the point that nothing productive was happening in class. This year, same school new teacher. She has 20 yrs. experience with special ed., but has never had a class of autistic kids. In this class of three, Jared is the only verbal child, he has done more work in class this year, but is starting to give his new teacher "the business".

This aggression has been going on for at least two years, and has escalated in the last six months. Twice over the holidays, Jared threw tonka trucks at me (oh, and he's got a good arm)while I was driving, because we weren't going to stop and buy him a toy. Tantrums erupt over the tiniest frustration, stubbed toe, hair washing is a nightmare. Jared will take out his frustration on whomever is closest. After three extreme tantrums (screaming from office, down elevator through lobby to the parking garage) over leaving the child psychologistsoffice, we've had the last two appointments without Jared.Unfortunately, Jared and his brother are well aware of the stress and tension between their parents. All too frequently Jared will scream and protest when I try to help him get dressed for school, his father enters the room glaring at me and asks Jared to get dressed, and Jared complies without a word. Jared skips happily into his classroom most mornings, when I take him he refuses to get out of the car. The last time, the school guard carried him kicking and screaming to his class, 20 minutes later he was fine. My husband thinks I am an abject failure with these children. Sometimes I agree with him, but it's not for lack of trying.

I am afraid that these violent tendancies are becoming so ingrained that Jared won't choose another alternative. I'm afraid for Thomas, that he shouldn't have to cope with this on a daily basis. Jared takes abilify, and we tried a anti-seizure mood-modifier for 6 days, but it seemed to make things worse. I'm most afraid and ashamed how this is making me feel towards my son.

As hard as this was to write, I feel better having said it. I love my child, so this has to get better.

this is so resonant of our family. we had a lot of violence and really tough stuff but it calmed downed hugely when our son was in a special school. we found that preparing him for every little thing that would happen, keeping really calm (even when you are bursting with anger!) and being really positive about acheivements (we use a marble jar for rewards with each marble being worth A pound) helped a lot. best of luck...

Hi Mom NOS,I tried to help her. We have and still do deal with aggressive behavior, and I find that the best thing for it is 1) to plumb the depths of the situation and try to understand what is bothering him, what set him off, and try to ameliorate it. Sounds obvious, but is not. 2) try to step back at the same time, out of harm's way, and to calm yourself. 3) dig down deep and find your reservoir of love for him and tap into that. It will help you, if not him, too.

I also mentioned the Yes and No boards, that helped remind Nat over time the desirable and undesirable behaviors, and what he would get if he followed the good. I told her to look for lots of opportunities of calm and good to reward.

Lastly, I talked about our experience with different meds for Nat, and how we keep him on a low dose of Resperadone.

Our six year old daughter has over the past year become more aggressive, it may be coincidence but it coincided with starting mainstream school. We were approached after one incident by the principal and set up a meeting to work out a plan at her autism school, who were shocked to learn what was happening. M was given social scripts and her mainstream school purchased some books on autism for children. She seems to have settled down, but still lashes out occasionally, especially when she is asked to do something she doesn't want, just everyday stuff. It's definitely worse when she is tired. When it is really bad we use distraction techniques, really just changing the subject to something unrelated, that calms the whole thing down.

Let me say thank you again for all these wonderful suggestions. I'm sure you all realize that it helps knowing that this situation is not unique. Redirection is a wonderful way to de-fuse, and I admit, when you come upon your son squeezing and twisting the dogs' ear, it's hard to keep your voice in check. My boys are mad for trains, it's about time we use them to motivate good behavior. I love the yes/no board idea as well.

Mom-NOS - you have a great group of friends, I came to the right place. Lisa

The Incredible 5-point scale: Assisting Students with Autism Spectrum Disorder in Understanding Social Interaction and Controlling their Emotional Responses is a fantastic and very (surprisingly) simple book complete with brief examples and explanations of the scale. The book is filled with blank scales for your use. We had unbelievable success with this on many levels. From how loud your voice should be.. (When I say "level 2" voice, it is a short and simple reminder during a transition and understood.) He can also tell me how he is feeling by using a number and we can remove him or rearrange things or let him choose to not participate depending on the number. This acts as a preventative before a meltdown or aggressive display. And he has a plan and a choice. "I am feeling at a three, I think I can sit here but I choose not to participate." or "I am at four, I need to be alone." Etc...If I ask, "How are you feeling right now?" A complex question, but easily answered with a number. It is also a visual, mutally understood chart you make tailored to and with your child. His teachers, helping professionals and the members of your family will use the same charts, adding them in gradually as to not overwhelm...between home and school there will be...consistency. It is auditory because hearing or saying a number can communicate a thousand words. You can give him a number to describe a behavior required for a situation and he can give you a number to describe a complex range of his feelings in any given situation. I got the book on amazon for a small price and we are transformed. Best of luck. Mommy0f3

I don't know if my comments will help, since our kids are of such different ages and different situations, but here they are! :) My daughter, who is nearly three, recently got her PDD-NOS diagnosis. The psych thinks hers is a very mild case and struggled with the diagnosis. She has few if any repetitive/perseverative behaviors, but has communication and social issues. She does talk, but is delayed for her age.

ANYWAY, my biggest problem with her a few months ago was her aggression. I know, she's 2, and 2-year-olds have tantrums, but this was ridiculous. It had gotten to the point where I would say left, she'd say right, and a tantrum would ensue -kicking, screaming, biting, hair-pulling, and (my personal favorite) pinching the delicate skin on your neck. She reserved the worst of her temper for me, her mama, though she'd hit others, too.I thought it frustration due to lack of speech, but when I tried to provide words for her by saying, "I know you're angry," it would send her into a tailspin of rage.I finally approached her tantrums like a researcher: when would she tantrum, what set her off, who set her off, etc. I realized that she had her worst tantrums in public, but NOT because she was anxious or nervous (she does not have anxiety problems and is not afraid of changes in routine) - she'd tantrum because she wasn't getting her way (just like my NT son)! I had to remember that not every problem with her is autism.

I decided to give time-outs a try again and was surprised at how much better she had gotten at them. I had given up on timeouts b/c she'd never stay in them, but I realized that she is just WAY more stubborn than I ever imagined. (I had to put her back in timeout at least 20 times before she gave up on escape. Her NT brother gave up after 3 failed escapes!) I do believe the super-strict regimine of timeouts helped with the hitting. As parents of autistics, we sometimes underestimate what our kids can do and don't insist on better behavior because we don't think they can do it. But I really believe that if they are smart and can learn, they can eventually learn not to hit.The other thing that I think helped us was taking her off dairy. (We haven't worked our way up to gluten yet.) The changes were quick to show up, and keep getting better. It seemed to mellow her temper a bit, so that she'd just get mad instead of insanely mad, you know what I mean? I know, it could just be coincidental, but others noticed a change in her, too.Finally, I've been working with her at identifying emotions, and she's really gotten a handle on expressing sadness to me. She was having a tantrum and I said, "I know you are mad, but..." she interrupted me and said, "SAD!" According to her, all that hitting and screaming was an expression of her sadness?... I really didn't believe it at first, but I have since learned to trust her. When she is having a tantrum now (although it is less frequent) I ask her if she is sad, and it almost always diffuses the situation and she breaks down into pitiful sobs and lets me comfort her.

I don't know if any of this is helpful for your situation with Jared. Maybe some of his problems, like my girl, are not really autism related but plain ol' child psych? He will behave for his Dad but not for his Mom? That sounds like a kid who is playing "divide and conquer" with his parents. Or maybe he is upset with you for some reason (however unfairly)and is expressing himself this way. (My NT nephew used to have crying jags over anything his father said to him. We realized it was manipulative - he was mad at his father in general, and he learned that when he cried his mom yelled at his dad. It was a great passive-aggressive way to punish his Dad.)Or quite possibly Jared is still upset over the move and is still dealing with it.

I sincerely hope things get better for you soon. I know the pain you are going through. We always love our children, but being physically abused by them takes a HUGE toll on our relationship with our kids. I can't say I love my daugther any more now that her aggression is better, but I can say I like being around her a lot more. And that is a huge improvement.

I am the parent of a 16 year old autistic son. We had pretty good luck with lots of social stories and picture schedules as well as the already mentioned stress reducers when he was Jared's age. One big stress trigger was ME! I hated to admit it but getting out the door on time stresses me out to this day and we had many before school meltdowns. But we used picture schedules to help my son become empowered to get himself ready. We followed him around for a day and took a picture of his day - Asleep in the bed, waking up, grooming, dressing, eating, etc. We then put these photos on a giant board attached with velcro and as he accomplished each task he pulled that particular photo from the schedule. He felt more empowered and I used time outs for me to calm myself down and I learned to mellow out and when to pick my battles! Plus we created social stories about anger and tantrums. "It is OK to be angry. When I am mad I need to go to my room to calm down. When I am in my room I can read a book or hit a pillow or etc, etc.” So we used the social stories to shift him towards techniques that would be safe and appropriate. They weren’t miracle over night cures but they did help. I do believe that we need to find ways for children to feel empowered and in control in their lives and this helped reduce tantrums in our home. Good luck!